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Removing the language of stigma

To the Heart of the Matter: Stigma, Labeling, and the Delicate Search for the Common Good

Mad in America; James Schroeder, PhD, 6/13/2015

In March of this year, Leah Harris published a wonderfully thought-provoking article entitled Why We Must Strike the Terms High-Functioning and Low-Functioning from Our Vocabulary. It clearly describes both the limitations and potential pitfalls associated with labeling, and how this can lead to long-term negative outcomes. Often in my office, I am asked to provide such labels, especially for children who have been diagnosed on the autism spectrum as parents and others try to gain some understanding of what to expect from them now and in the future. But as noted in the article, I also feel that the question is fraught with complications, the first being that we all operate on so many different dimensions that it is impossible (and incorrect) to simply categorize a person in one term. Human beings can’t, and shouldn’t be equated to a simple descriptor, as we are a constellation of so many parts that make up who we are continually becoming. I appreciate Leah taking the time to flesh out all the different ways that functioning designations such as these can go wrong.

But since this article was published, I have found myself coming back to fundamental questions which still loom about the topic of labeling and stigma. The first is the topic of labeling itself, and the often asserted notion that labeling is bad and automatically results in stigma. I think that this belief, too, has its own pitfalls. Historically, there have been legitimate reasons to label and describe particular behaviors, including for the purposes of communicating more efficiently/effectively or providing an ability to research a particular trend. Not all labeling is sinister by nature. Some actually has, and continues to have good intent and outcomes. Just as words and weapons can be used for noble or abusive means, so labeling a particular behavior or conglomeration of symptoms can be done (or result) in positive or negative circumstances. I realize that many reading this may feel angry at the positive possibilities of labeling as they have experienced it in a negative way, but I think it is important to recognize that an alternative outcome can exist.

One of the benefits to providing a label for symptoms that are significantly distressing or impairing is simply to designate that there is a clear need for assistance. Leah and others in her article embrace the idea of the neurodiversity movement, where all experiences and behaviors are seen as part of natural variation in the human genome and not abnormal or impairing circumstances. In theory, this sounds like a kinder, gentler way of perceiving what happens to all of us. In some ways, I agree that all that we do is part of the variation of the human experience, no matter how far off the “normal” or “healthy” pathway it may be perceived to be.

But there is at least one serious hiccup to this movement, in addition to my concerns previously expressed about how this provides a confusing landscape for teaching what is healthy and/or normal in order to provide for well-being. It is the matter of how we know who needs assistance and who does not, and then the authorization to provide resources for those who do. This was passionately, even angrily, articulated by the first commenter on Leah’s article, who stated:

“The neurodiversity movement is hurting those of us who genuinely are debilitated due to our autism. Do you even care about that? Not to mention that those of us who are debilitated by our autism need to be able to use the descriptor “low-functioning” so that we can get the supports we need. Without that descriptor, there’s no reason for anyone to think we need any help or support at all. Again, do you care about that? It seems to me like all you care about are autistic people who aren’t debilitated and who can function independently. Well, from an autistic woman who struggles daily with social anxiety, depression, hypochondria, and general anxiety disorder (and yes, all of those conditions were professionally diagnosed), and who can barely work as a result of all of those conditions, I’m not going to stand for that.”

It is a serious concern. There are many people who desperately need and desire help for conditions that have nothing to do with stigma or labeling, or cannot be accounted for by the social model of disability. There is no doubt that societal and cultural factors bear much responsibility for what happens to individual human beings. But I think it is a stretch to state that these factors are the main contributing factor to disability, as all kinds of societies see similar problems even if to varying degrees. I see this most in the families I work with who have a child diagnosed with an autism spectrum disorder (ASD), whose children often struggle significantly with a variety of basic skills that impair daily functioning even when all available resources and consideration are provided. Along the issue of stigma, too, it is interesting to note (for better or worse) that more parents of today (who come for an evaluation regarding ASD) are surprised, and even frustrated, when the diagnosis is not given than when it is. This in itself, though, is a discussion for a later time.

But the other position that often gets promulgated unfairly is that stigma is a one-way street. So frequently I see articles that suggest that a label given = stigma. Although I again realize this is a delicate, emotional subject, I think that simply suggesting that labels (and those that use them) are responsible for stigma is like suggesting a clinician providing a treatment is always responsible for negative outcomes. Certainly, treatments can be inappropriate, misused, or altogether ineffective, but we all understand that there is a bidirectional relationship that exists. Simply put, for every action, there is a reaction.

The same applies with labeling. I know many who have received a diagnosis, and have seen it as an empowering, freeing idea (again, for better or worse), in that they no longer feel solely responsible for their deficiencies or struggles. I know parents who have felt relief in understanding that a child’s problem-solving skills or even overall IQ was less-developed than his or her peers, as it helps validate confusion and reduce blaming about why repeated instruction of various natures was not having the same impact as it did with another one of their children. I believe that what we do with the labels given is just as important, or sometimes even more important, than the label itself.

Recently, a family friend by the name of Michelle Krack wrote a memoir of her struggle with Bipolar Disorder, aptly labeled Michelle May Crack. I admire her greatly for telling this story of intense struggle and resiliency, especially as it included difficult details about her childhood that most would not have known. On the inside of the book I purchased from her, she inscribed to me, “Make a difference—Beat the Stigma” as she has certainly dealt with much of it over her life. When I read this, something about the statement struck me, immediately arousing the question, “Just what are the best ways to stop the stigma?” as it certainly wasn’t just the label for her that led to many problems. It also led me to consider just how we often speak of stigma, as if it is almost a living, breathing organism itself that flows throughout our land. But of course, we all know that stigma is really an intricate composite of individual experiences and reactions over time, each that presses an individual into difficult, uncomfortable decisions and circumstances. Ultimately, it seems that stigma manifests itself most when fear and embarrassment (understandably) leads to a condition of low worth and feelings of powerlessness and/or isolation that persist over time.

But in order to counteract stigma both on an individual and societal level, we have to be honest about all of the parts and people involved in its creation. And that’s where I hope this article leaves off, and encourages many others to begin. Otherwise, I worry that the discussion of stigma and labeling risks becoming another sound off, and not a truly informative and dynamic conversation about all the factors that should promote labeling when it is needed and necessary, and either remove or neutralize it when it becomes detrimental. It seems we should spend as much time identifying (and teaching) factors that facilitate resiliency when labels are given as we should in reducing labeling in the first place. As mentioned in prior articles, I prefer minimizing the use of labels whenever possible in my own practice, but sometimes I believe that descriptors and even diagnoses are warranted, and even can be useful. Certainly there are many pieces in this human puzzle, all of which play an integral role in perpetuating the common good.

I will end with Leah’s conclusion. She said:

“Imagine what would happen if we began to have some respect for the varied ways that people do their best to adapt and function, sometimes with amazing creativity, in a deeply dysfunctional world? I would like to see us cease to blame or shame individuals for their level of functioning in society, and instead work to create a more equitable and just world that meets our basic human needs and human rights.”

It is a beautiful vision, only made more beautiful by one additional idea:

“Imagine, too, that all of us could better understand what role we played in our struggles and shame, and that in truly acknowledging what these might be, we would valiantly strive to overcome internal obstacles in seeking out the best possible alternatives for ourselves and others, even if many did not agree with, or value us, along the way.”